Article

Togethering as a frustrating, messy yet meaningful journey

“Every family has its stuff.”

As a sensitive child and angsty teen, I took comfort in this mantra. Now, as an adult with my own partner and children, I find myself thinking about it when health and care needs stoke the fires of my family’s “stuff.” This is my messy story about “togethering” and how, for intergenerational families, coming together to take care of each other can be unpredictable, seemingly impossible and profoundly meaningful, all at the same time.

My parents are proud first-generation Canadians from Southeast Asia, having met here at university. As both were on international scholarships, they were meant to return home to teach after graduation. Instead, they stayed and created a life from scratch.

They repaid their governments and sponsored my mother’s parents and their siblings to Canada. For periods of my childhood, I lived in a bustling household of anywhere from nine to 13 people. Later, when my uncle and grandparents moved into their own home, we still considered ourselves one big family. Like many of my friends with immigrant parents, I consider myself lucky to have had an intergenerational upbringing.

I remember age 9 well because that was the year my mother got sick. She was eventually diagnosed with a rare autoimmune disorder that left her neurologically impaired and deeply depressed. I usually explain it as a stroke from which she never regained full cognition (speech, memory, planning), mobility (balance, coordination) or emotional regulation. In a few short years, she went from a thriving full-time educator taking night courses and running a big household to taking disability leave, losing her driver’s license and identifying as a “dead for many years.”

My father became a sole income provider and spent most days and evenings working. My siblings and I learned how to help around the house, drive as early as we could, interpret my mother’s speech for others and take care of ourselves. Thanks to a special occupational therapist (whom I will forever consider “our angel”) and my mother’s deepened spiritual faith, she reclaimed life – albeit a new life – a devoutly religious activist, choir singer and volunteer with the homeless.

Our grandparents were steadfast pillars in our lives. They would phone most days to check in and take us, usually by public transit, shopping or to dinner outings. By their 80s, however, they had started to slow down and eventually needed support beyond what our extended family could provide at home. Moving them into separate care homes (due to differing care needs) gut-punched me repeatedly over the 10+ years they lived there. Knowing how much they both wanted to live with family, I learned that there was no antidote for feeling like we had abandoned them.

I learned that there was no antidote for feeling like we had abandoned them.

Navigating the home-care system and supporting them in long-term care fundamentally altered my life’s purpose. The agony of my grandpa spending his dying days locked up in long-term care without visitors solidified my resolve. These encounters with our “universal health care” led me to vow for a different outcome for the next generation – my parents’ generation.

Compared to my childhood, I realized my once integrated intergenerational family now led pretty nuclear lives. At one point, my siblings and I lived in five different countries. We were educated, independent and resourceful, each striving toward our own dreams. Our parents were similarly independent in their retirement – travelling the world and part of many church and social groups. My siblings and I often joked that our lives were dull compared to that of our parents.

Then the pandemic hit.

Like most seniors, their lives came to a grinding halt. A year and a half into the pandemic, my mother’s already compromised health declined considerably. She complained of chronic pain and went from walking slowly to using a cane to then needing a rollator.

By Christmas 2021, a few falls had gotten the best of her and she could no longer walk at all. It turned out her joints were experiencing “tissue death” and needed emergency hip replacement. Her recovery involved a month of rehab in hospital, complicated by her pre-existing neurologic and cognitive conditions. Despite not yet regaining independence and being considered at high risk of more falls, she was discharged.

My siblings and I convinced her to move into a retirement home with round-the-clock care staff. After more falls and negotiating “care add-ons” (e.g., nighttime checks), her stay for the month rang in at nearly $7,000. Hit by sticker shock, and still barely able to walk or take care of herself independently, our parents decided that she would move home. Our offers to contribute to care costs would not change their minds.

With my father having his own health issues, my siblings and I tried to arrange home care for my mother. She was only approved for one hour each day of publicly funded home-care; hiring a private caregiver was the only option to fill the gaps. However, this led to a series of family blowouts over my parents “not needing the help” or not wanting “strangers” in their home. And it has led to disputes and strained relationships among us siblings as we each try to help out as best we can.

Two weeks after going home, my mom landed back in the ER after another fall and now sits on a knee replacement waitlist. The paradox is that they can’t operate until her previous injuries heal, but she risks further injury each day she moves around in her condition. We are fortunate that her new social worker (another “angel”) found her a transitional care home stay covered by OHIP. It is unclear whether she will be discharged before her surgery, in which case this cycle of stress, anxiety and risk likely will repeat. Ultimately, our parents will continue to fight for their functional and financial autonomy, yet largely rely on us to help during crises.

Much of the time, I rage over how irrationally I find them to be acting. But then I am reminded of who they are and what home and autonomy mean to them. They are both self-made, first-generation Canadian life-builders and survivors. They took care of their family and overcame adversities, united as a steadfast unit. Their personal and social identities are at stake. Their sense of “home” and ownership over their lives are at stake. Their finances also are at stake but pride keeps them from letting us contribute to care they simply don’t think they need. At this point, paying privately for home care services seems like overpaying for insurance – that is, to mitigate my mother’s risk of falling. From their view, it makes more sense to save money for “when we actually need it.” Discussing and planning for their care in the longer term is, frankly, unpleasant. They often say to us, “Well, only the Lord knows what is to come.”

When people tell me ‘set boundaries’ and ‘prioritize self-care’, these concepts remain elusive in my reality.

All of this, of course, leaves us children lodged between a rock and a hard place. The way in which “caring” has come to eclipse our sibling relationships and our lives is something our parents do not understand. Desperately trying to manage our own lives while respectfully nudging, negotiating with and helping our parents. We have limited control over their decisions, yet we are always the first responders when they are in need. As children living locally, one sister and I are often called away from work or our young children to respond to their inevitable emergencies.

Yes, we do it out of love for them and our family as a whole, but we also do it because their lives affect our lives. Like it or not, we are interdependent. For me, as a local child, every crisis, situation and even phone call is a choice I have to make. The hardest part is knowing that, when I step back and choose not to respond, my siblings may have to overextend themselves to fill the gap. So when people tell me “set boundaries” and “prioritize self-care”, these concepts remain elusive in my reality.

Clearly, there’s no “right way” to manage these challenges as a family. We each have our own values, perspectives, capacities and so on. I’ve come to understand it as a push, pull, break, repair (hopefully), and repeat process. It has also unearthed parts of myself that need both work and nurture – my idealism, perfectionism and drive to “rescue.”

Despite our loving intentions to protect and sustain them, what my parents choose as “home” is up to them. When foresight and planning are limited, when the decision is not ours to make, what more can we do but make the next right choice for ourselves? Act or let be. Often, the choice is between hurting or preserving the relationship – be right or be close.

I read somewhere that, while each of us will die one day, it is our relationships that will live on. In that, I’ve discovered somewhat of a compass – some meaning in this mess.

Leave a Comment

Your email address will not be published.

Authors

Amy Hwang

Contributor

Amy Hwang is a second-generation Chinese Canadian mother, care partner, social entrepreneur, and aging + design researcher. Her mission is to help individuals, families, and communities co-create more meaningful relationships as they age together.

Republish this article

Republish this article on your website under the creative commons licence.

Learn more